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Type: Posts; User: annekat

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  1. Replies
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    Re: just starting meds

    Brad, my first symptom was a severe antibiotic resistant ear infection in both ears. That is a pretty common one among those with sinus involvement, though some don't get that. WG/GPA has a way of...
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    Re: My journey so far

    I'm sorry to have missed this thread earlier somehow. Karen, how patient you have been on the long road towards a diagnosis. It's true that not all rheumatologists and pulmonologists know much about...
  3. Thread: Avacopan

    by annekat
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    Re: Avacopan

    Pete, this sounds like a dream come true. I wonder if patients like me, and maybe you, who are not in "acute" Vasculitis, will be able to use it. Will be interested in knowing what your doc in...
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    Re: just starting meds

    Dr. Seo at Johns Hopkins is highly recommended as a GPA doc, and I can think of 3 Weggies I know who are extremely happy with him. I think there are more. And someone on here recently mentioned being...
  5. Re: Journey to being diagnosed, treated, and already first flare up

    Welcome Onirin and Mnjet . I came in late to this thread, and excellent responses have been given. What's most noteworthy from all the posts including yours is the wide variation in different...
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    Re: Happy Birthdays Thread

    Nice to hear from you, Jeto. I'm glad to hear, it sounds like you are doing pretty well. I haven't seen Bing on the forum for awhile, but maybe he will see this. All the best to you and your family....
  7. Thread: Liver Spots

    by annekat
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    Re: Liver Spots

    I'm 67 and I have them, too. Sometimes they seem to appear overnight. I wouldn't worry much.


    Sent from my MotoE2(4G-LTE) using Tapatalk
  8. Re: shankxonline - My path to identify GPA and overcome it

    I'm on the same dose of MTX as you are. I was started on 10mg/wk about 7 years ago but that is a really low dose, and I flared, so it was raised to 12.5mg, which is pretty common, though some use...
  9. Thread: Meds

    by annekat
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    Re: Meds

    Hi, Masha,
    I know that there are things I need to apply for, such as getting on Medicaid in addition to Medicare, and getting "extra help" from Medicare, which I've been approached by my insurance...
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    Re: Trying to learn all of this

    Mindy, yes, you are under great care with Dr. Villa Forte. I have heard nothing but excellent reviews of her.
    One thing got my attention: positive p-anca is characteristic of another similar...
  11. Thread: Meds

    by annekat
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    Re: Meds

    I don't know if Medicare would cover much Rituxin for me if I needed it. I can't afford a plan like Pete's. I do have a Medicare Advantage plan with most charges about the same as Original Medicare....
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    Re: Anyone ever try CBD ??

    Dede, thanks for the info. I have a couple edibles lying around. Gummies. In past, got mild vertigo when I took a half dose, but just high with a full dose. It was straight THC, no CBD that I know...
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    Re: Anyone ever try CBD ??

    Hi alexciasmom. I too got lost trying to find the original poster and what they asked. I was just relaying my experience at the time. This has changed since then. For a year and a half, I've been...
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    Re: Happy Birthdays Thread

    Funny, I was just talking about you and didn't know it was your birthday. I'm glad it was a good one including seeing your God daughter. I mentioned you to the new Aussie member and also hinted about...
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    Re: Newly diagnosed and Divorcing

    Yes, please do!

    Sent from my MotoE2(4G-LTE) using Tapatalk
  16. Re: Mal Brown. Diagnosed 10 years ago but new to the forum

    Welcome to the forum. Everyone's story is a little different, which keeps it interesting. This is a great group, and our members are all over the world. There are some other Aussies here who will...
  17. Thread: new

    by annekat
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    Re: new

    Welcome to the forum, HSD. I can't speak specifically to MS, but I know it is not uncommon for a person to have more than one autoimmune condition. I hope if someone here also has MS that they will...
  18. Re: shankxonline - My path to identify GPA and overcome it

    Hi, Sherry,
    Actually my symptoms are really much better now, since I started treatment in 2011. That doesn't mean it will take you that long, since you had a fairly quick diagnosis and I was living...
  19. Thread: Richmond va

    by annekat
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    Re: Richmond va

    Hi, Bradhunter,

    At this point I don't even feel the MTX since I've been taking it about 7 years. But at the beginning there was a slight feeling of nausea, though not enough to actually throw up,...
  20. Thread: Richmond va

    by annekat
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    Re: Richmond va

    Someone I know in VA and one in MD are going to Dr. Seo at Johns Hopkins in Baltimore for WG/GPA. He is very highly thought of by them and by the Vasculitis community overall. If you can't get in to...
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    Re: In process of diagnosis

    Welcome, Mindy, and it sounds like you are on the right track. Pete is an excellent source of information, and you are lucky to be able to go to the Cleveland Clinic, even if it is a 4 hour drive....
  22. Re: shankxonline - My path to identify GPA and overcome it

    Hi, Lea, and welcome to the forum. I have been coming here since March 2011 right before I was diagnosed. My saddle nose happened suddenly around the same time that I was in the hospital overnight...
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    Re: Methotrexate without Prednisone

    Welcome to the forum, Chris! When I was dxed back in 2011 I had about the same symptoms as your daughter. A perforated septum had quickly developed into a saddle nose, I had heavy involvement in...
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    Re: Newly diagnosed and Divorcing

    Sorry for all the stress. Meditation is a great idea. I've been telling myself I need to make time for it, and your words may influence me to just do it, and not to forget to. I have stress, too, but...
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    Re: pberggren memorial thread

    Alysia, what a busy day you had! I have few symptoms of WG anymore, but still get the crushing fatigue every day and have to neglect some of the things on my list. Your energy is amazing, and I know...
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